Another Magical Moment

I started this blog to inform family and friends all of our "goings-on" with Anthony a few years ago. I used to send these huge emails to "update". He always has something going on. Then one day I thought - maybe not everyone wants to know. Then began, the blog. Where you read if you want, or not. Your choice. Then I thought of the name. Because at our house, there are soooo many moments, with all of my kids, that make some great stories - so I put them here.

This is another one of those times.

As I sit here with my eyes glistening with tears, and my heart so full I can actually feel it swelling through to the limits of my entire chest, I feel such a sense of peace and hope I can hardly grasp it. Tonight, there was a moment I never want to forget. One that came and went in a span of just a few minutes, but will resonate with me forever.

Like this one - where I took Anthony on his first Merry-Go-Round. He held on tight to my neck, his little hand clutched in my hair through most of the ride. But he loved it. And so did I. The wind rushed against our faces and we flew instead of just rode that horse. I was a regular mom here. Just a mom taking her son on a horsey-ride. It never occurred to us in this moment that we were "different".

This is one of my absolute favorites too. This was on his first birthday. We were just a mom and her first child. Spending way too much money on fancy photographs, because he was our first. And I love that we did. Because this day- I felt beautiful, motherly, and loved. All the dreams and hopes I thought weren't mine to hold, because we were different, on this day -I did. That day I held them all in my arms, because that boy was, and always will be, my son. First.

And these little faces, caught by my photographer friend for a local Down syndrome support group's marketing, are of my son. Precious as always, but chosen for his "difference" to educate and create awareness. He has changed so much since these. I thank God that I have them so that I can remember that young little baby face.

Seriously - is he not THE cutest???

And then there are times like tonight. Times where because he is different, they are that much more special.

Most of you know he has a pretty serious verbal disorder, that is separate from his Down syndrome, that makes communication, understanding him, and essentially relationships with him, very difficult.

One thing they don't tell you, is that on that extra chromosome, are these little opportunities for miracles. Very big miracles.

The ones others easily take for granted, but for us, are glimpses into heaven.

Maybe you have a child you could just hand a pacifier. Ours was Bella. You just put it in, and off she went with it. However, when Anthony finally used a pacifier - we celebrated. He was in the NICU for 2 weeks at this point, and when he accomplished this task, we knew he was just that much closer to coming home. It was a big deal. We went out for dinner!

It was a very big deal when he finally nursed, after 4 months.

Another big deal when he walked, after 3 years.

When he said "Papa", his first word, at 3 1/2.

When he walked up those stairs - and alternated his feet! At five.

When he rode a bike at 10.

When he was Potty Trained!!!!!!!!! At 12. (See previous post).

The thing about him, and so many of us, is that when he has to work that hard for things - it is a mountain, not a milestone. It is bigger than a developmental step. It is a LEAP! And like us, after difficulty, we treasure the moment we are free from it.

I treasure this moment like all of the above added together.

Tonight - I had a great conversation with him.

Did you see that?

A CONVERSATION.

The only thing left on my "checklist" is his speech. I have always had this list. I'm sure you have one too. The "everything will be better when..." list.

The one I have had for him had walking, potty training, alphabet, reading, riding a bike, etc...

Speech has always been on it. But I have been very reserved on that one. Not wanting to be "disappointed" if it never came, I have left it there with hesitated hope.

I have even been afraid to pray about it, because what if it doesn't come? What if the answer is no?

But then, I let go of all of that and am now in the firm standing that, with or without "words", my relationship with him will not be based on that. That I need to be happy now, not "when..."

And lo and behold, once I let go, I got what I wanted.

Or maybe I just let go of what I was expecting, and really just began to enjoy what I already had.

I already have a relationship with him where I can understand him. Where I do know what he wants. And we can talk to each other and grow closer everyday. It's hard, but it IS there.

Tonight, we had a back and forth interaction about his birthday. I wish you could have SEEN the attempts at him saying June 9th. That he wanted to go bowling, and all the friends he wanted to invite. We even made a list. With every word he lit up in his face. With every name, I knew who he was talking about. With every sound, there was an effort like never before. He and I talked about his birthday. We were a regular mom and son discussing birthday wishes and celebrations for his next birthday. Yes, it is a ways off, but that's the fun "typical" part of it too. We even referenced his age - 13!

But this was no "regular" conversation. Because we ARE different. This was one of those moments of magic. This was an extra chromosome miracle that only we get to have. This was a mom, connecting to her child. This was everything I keep dreaming of. And right here, right now - I am in the presence of it, and him, and the wonder of it all.

Yes, I will continue to drag him to speech, practice it everyday, and even more... I will continue to pray. I want everyone who comes into his life to have connections like these with him. I want you to feel the power of relating to someone that has so much to give. I want you to feel this blessed. I want to share him with you.

Another really cool effect from working this hard - ohh, it is such a sweet thing - is the realization that after all the hard work and time and energy - it was worth every ounce of it.

Because you find yourself, living in a moment of greatness, being a witness to something miraculous, because you know how hard this is, and how long it has taken -and then just when you think you can't take another moment because it is that overwhelming -

He writes "mom" on the invitation list.

Funny moment with Emma

Little Emma is 7 now, as you can see. She is growing up, but she is still the absolute joy she has always been.

This is one those stories I didn't want to forget, so I am writing it down, right here, and sharing it with you.

We have been teaching her and Bella to play Cribbage, which has been very fun. I didn't learn myself until I started dating Shaun. Although we have added some new vocabulary to the game, it has gone quite well. (For example, to remind her to jump over the peg for counting, we keep telling her "leapfrog".)

Last night she was playing with Bella and I was coaching them both through it. So it's Emma's turn to deal. She was handing out the cards in a very different fashion. It worked, but I knew some of the people she may play with other than me, might not appreciate how she was doing it very much. She has always been so creative. Just when you think there is only one way to do things, she shows you how to shake it up a bit. Anyway, I thought I should mention how it was fine with me the way she was doing it, but that I wanted her to know how most people do it, so that when she was playing with them, they wouldn't get upset with her for not doing it the way they are used to.

"So they get kinda mad?", she asked.

"Yes, some people can get pretty particular on how the cards are dealt." I responded.

To which she says, "Yeah, some people can be so miniature".

I know she meant to say "immature". But I giggled to myself and thought of all the people I play with, that can be so "miniature". You know, petty, particular and irritable. Taking all the fun out of playing the game.

At least with Emma, as little as she actually is, being "miniature" isn't an issue for her.

Goodbye - You drove me Crazy.

I had a secret stash in my closet.

"Just in case".

But Now-I can Officially Say Goodbye.

I can let them go.

I can let my reliance on them fly out the window.

I can be free of them.

I never thought the day would come.

I thought it would never end.

I used to go crazy about it.

Worrying, making charts, buying rewards, worrying, giving candy, giving bribes -

Worrying.

But I can say it now.

GOODBYE PULL-UPS!!!!!!

Anthony is officially potty trained. He has been for a while. But I have kept these things , just in case, as if I was imagining it and one day I would wake up and we would still need them. But here we are.

We have been working with Anthony since he was 2 years old on this. He always went, every day, on the toilet. But he wasn't ready to do it on his own yet. We knew it would take a long time. "They" told us it would. But at 4, 5, 6 and 7 we really didn't think it would ever happen. It was so stressful. People were always giving us tips, helpful advice and tricks. And we used every single one of them. Charts - only I was trained on that. Stickers - he hated because they always give those out at the doctor, and he hates the doctor. Candy - he only liked sometimes. Matchbox cars - he has at least 30 from those efforts. We tried just putting him in the underwear so he could "feel" being wet. He has sensory issues - except when it came to that. He didn't really care. I even bought him a doll he could teach. (When is someone going to invent a car that needs to go potty - maybe that would have done it?)

I had a family member ask me how long it could take. I told her "as late as 8". (Yes, I had researched it.) He was 7 at the time and she responded with her own sigh of relief - "Oh good, you only have a year left." I watched other kids get potty trained that were born after him - before he was even close. Even Bella and Emma beat him.

I knew someone who said her son was trained in one day.

I had become exasperated.

Really though - WHAT IS IT about us as mothers that makes us think it's all our fault if they aren't trained by a certain age? There is another person I know who took off work to potty train her child in a 2-day training method? Really? I felt like such an inept mother. One day while crying to my dear friend Erin - she said something that I will never forget, I tell everyone I meet, and changed my whole perspective.

I was complaining that some other child was potty trained in one day, and that we had been working on it for 5 and a half years now, with no end in sight. In her special way of calmness and peace that she carries with her, she said - "He'll be potty trained in one day too. ONE DAY - HE will be potty trained."

Now that was the brick in the head this momma needed. I stopped worrying, I stayed consistent, I let him do what he could, when he could, and I respected him. And 5 years later - my one day came. Or rather, HIS one day came. And He is potty trained. And now, after it's all said and done, I realized that what we all hear while we are trying to potty train our kids - but don't understand until they're done - is that THEY DO do it themselves on their timeline, under their understanding, and with their determination. They potty train themselves, we have hardly a thing to do about it but keep consistent, patiently wait, and realize this is not about us.

I love that his one day finally came for him, that he can finally be free of pull-ups, that I can carry a purse. Yes, he will be 13 this summer, but he really did it by age 12. I don't even have to remind him anymore. It took us 10 years. But we got here. I just didn't want to jinx anything by posting too soon about it. But this post, however weird to some readers, is one of the most exciting ones. I love how when I hear the toilet flush, my heart feels fuller and I just rejoice in the moment. He's the only kid who can make me do that with that sound.

And who cares that by the time I got to proudly buy "big boy underwear", I also had to pick up deodorant and acne cream. In the end, freedom - is a very sweet reward.